Hello all! I was diagnosed with Chiari malformation type 1 on January 23rd and have been reeling ever since (well, I suppose in some ways, before as well). I also have Hashimoto's thyroiditis and fibromyalgia. My rheumatologist sent me to a neurologist as I had so many neurological symptoms with my fibro: tremors, palpitations, feelings of ants crawling up the side of my head, one leg starting to feel heavy and "asleep" with pins and needles, severe fatigue, muscle weakness (I call it my body "humming"--it just feels like jello all over), horrible body aches, stiff and sore neck and shoulders almost daily, spasticity and exercise intolerance, foggy thinking, occasional hazy vision, severe headaches in the back of the head that shoot forward and get worse when I lie down, and so on. I've had many of these symptoms for literally decades, but it has become significantly worse in the last year and I've been off work--I'm a middle school teacher--since October. It may be notable I had two back surgeries, both microdiscectomies/foraminotomies/laminotomies at L5/S1 in 2006 and 2007 after the disc was ripped apart during childbirth (whee).
The neuro wanted an MRI to rule out multiple sclerosis, and that's when the Chiari malformation type 1 was discovered. He was completely dismissive, saying it had nothing to do with my symptoms, and attributed it all to my fibro (and possibly thyroid). I'm a bit bothered because he never looked at the MRI images himself--he just went by the MRI report. The report makes no measurements of the herniation, but simply says I have "very minimal cerebral tonsilar herniation." Best I can determine using the images and software, the herniation is between 3-5mm. It all just didn't sit right with me. Plus, from what I understand, the size of the herniation is not what matters, but I could be wrong.
Here is one of my MRI images showing the Chiari:
It seems to my unprofessional eyes my spinal cord and brain stem are compressed and there isn't much room for CSF flow, but what do I know. :/ What do your more experience Chiari-eyes see? (I take everything I read on the internet with a grain of salt, so I understand no one can diagnose. I'm seeking insight and input from experience, not diagnoses or medical advice.)
I really advocated for myself with my PCP, who I adore, and after a good discussion, she decided to send me to another neurologist for a second opinion. She's also sending me to the neurosurgeon who did my two back surgeries for his opinion as well. I do not want surgery, but I want someone to convince me the surgery isn't warranted and the symptoms unrelated to the Chiari. Right now it seems everyone is going by what one radiologist typed.
I also sent my records, MRIs, etc. off to Dr. Ulrich Batzdorf at the Chiari program at UCLA yesterday. The doc will review my material and then they will contact me in the next 1-2 weeks to let me know if they consider me a Chiari case. In the meantime, I see my new neurologist tomorrow...I have hope that she'll take the Chiari more seriously, but we'll see. The more time passes, the more symptoms develop, the more convinced I am that the Chiari is behind a lot of my issues--but perhaps I'm just convincing myself, I dunno. My continued fear is I'll be told it's nothing, la la la, move along. I'd like someone to at least investigate further if I'm to be truly reassured of that.
I've come here looking for insight, information, support, and kinship--thank you so much for welcoming me here. I am looking forward to your comments! In the meantime, back to perusing the forums. Take care all!